My joints subluxate and dislocate when I move, which causes a lot of pain. This pain is multiplied intensely when I weight bare or walk. This is why I made the decision to start using a wheelchair at the end of December 2017.
Some people may consider using a wheelchair to be the ‘easy’ option. Using a wheelchair is by no means the ‘easy’ way out. In some respects, it is actually harder. For example, you don’t notice the inclines of routes you walk regularly until you have to propel yourself in a wheelchair. You don’t notice the steps into shops and restaurants until you try and enter one in a wheelchair. You don’t notice how narrow doorways or supermarket isles are. Propelling your own body weight plus the weight of the wheelchair and any bags along over uneven terrain is tiring and painful (this is made especially difficult because EDS affects my shoulder and elbow joints too).
When I am using a wheelchair, this can cause my shoulders to pop out, but the pain caused by my shoulders I can deal with compared to the pain in my legs caused by walking Often, the worst pain isn’t while I am walking, it come’s once I have stopped. When I use a wheelchair, I often feel like a fraud. This is because I am capable of walking, but it hurts. The reality is that most people who use a wheelchair can walk, even if it’s just short distances. It’s just less painful to use a wheelchair. Especially if it’s a long day out, or a day that involves a lot of walking.
Thursday 29 March 2018
Friday 9 February 2018
What is it like living with Ehlers Danlos Syndrome?
Your soft tissue acts as a special glue which is supposed to keep your body and joints in the right place. Ehlers-Danlos Syndrome (EDS) waters that glue down and makes it weaker. So, if you have EDS, your joints don’t stay where they are supposed to. Ehlers-Danlos Syndrome is a rare, inherited connective tissue disorder. It affects the tissues that support the skin, bones, blood vessels, organs, tendons and ligaments. It causes defects and anomalies in connective tissues which cause the symptoms of EDS. These symptoms range from mildly loose joints to life-threatening organ ruptures. There are different types of EDS which have different symptoms, but there are some symptoms that overlap between the different types. These include joint hypermobility, intense joint pain and fragile skin that breaks or bruises easily. The different types of EDS are caused by faults in certain genes that make connective tissue weaker. Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both parents but sometimes the faulty gene isn't inherited, it occurs in the person for the first time. Ehlers-Danlos syndrome is genetic, which means that is as much a part of someone as their skin tone or eye colour. Someone can have Ehlers-Danlos Syndrome but show no symptoms of the condition for the first 15-20 years of their life, and symptoms can be triggered by something as simple as a virus.
EDS affects people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare, severe types can be life-threatening. I have Ehlers-Danlos Syndrome, type 3 (Hypermobile EDS/HEDS). This means that the tissue that surrounds my joints doesn’t do it’s job, protecting my joints and keeping them in place when I move, and this makes life very difficult and painful for me. Ehlers Danlos Syndrome (type 3) is the most common form of EDS, but it is still under diagnosed. Other types of EDS can affect the soft tissue which makes up your internal organs, which can cause internal bleeding and organ ruptures.
If you move too fast, or move at the wrong angle, then your joints will come out of place, sometimes it’s a subluxation (where the joint moves too far but stays relatively in place), but more often than not, it’s a dislocation. Most Ehlers-Danlos Syndrome suffers prefer to attempt to relocate their joints themselves, as this happens so frequently, before seeking medical attention. This is something that other people struggle to comprehend, especially medical professionals who see patients in agony from dislocations on a daily basis, but I always explain it in the sense of ‘why would I spend hours in hospital in agony while waiting for x-rays and then someone to put it back in place, when I can put it back in place and end the pain briefly?’. Each time your joints come out of place, it makes the already compromised surrounding tissue weaker.
Ehlers-Danlos also causes lots of other symptoms, including fatigue, easy bruising, joints that click and digestive problems. Fatigue feels like you are in your own personal bubble of increased gravity, everything, no matter how small, is an achievement. It makes it almost impossible to accomplish anything. It’s as if someone has replaced your bones with concrete. Imagine spending your life on a wobble board, EDS is a little similar. Ehlers Danlos Syndrome affects every aspect of my life. I have to constantly think about what my joints are doing and coordinate myself to try and avoid any unnecessary subluxations or dislocations. I bruise so easily, so walking up the stairs and knocking my shins or having a simple blood test can leave me with severe bruising. Sometimes I bruise from someone simply touching me. My joints click excessively, which causes me a lot of pain. If I reach to get something, or even stand up, it can leave me with the pain and unpleasant sensation of my joints clicking and coming out of place.
It is something that is often misdiagnosed or missed completely because there is so little understanding about the condition, even in the medical profession. I don't know what its like to have a normal range of motion of my joints. They go too far in the right direction and they go in the wrong direction completely. As a result of this, I get crippling pain, which most painkillers won't touch. This is something that is going to affect everything that I do for the rest of my life. Some days are worse than others, and there is no cure, but, now I know what I am fighting against, I can arm myself with the knowledge to help make my life easier.
EDS affects people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare, severe types can be life-threatening. I have Ehlers-Danlos Syndrome, type 3 (Hypermobile EDS/HEDS). This means that the tissue that surrounds my joints doesn’t do it’s job, protecting my joints and keeping them in place when I move, and this makes life very difficult and painful for me. Ehlers Danlos Syndrome (type 3) is the most common form of EDS, but it is still under diagnosed. Other types of EDS can affect the soft tissue which makes up your internal organs, which can cause internal bleeding and organ ruptures.
If you move too fast, or move at the wrong angle, then your joints will come out of place, sometimes it’s a subluxation (where the joint moves too far but stays relatively in place), but more often than not, it’s a dislocation. Most Ehlers-Danlos Syndrome suffers prefer to attempt to relocate their joints themselves, as this happens so frequently, before seeking medical attention. This is something that other people struggle to comprehend, especially medical professionals who see patients in agony from dislocations on a daily basis, but I always explain it in the sense of ‘why would I spend hours in hospital in agony while waiting for x-rays and then someone to put it back in place, when I can put it back in place and end the pain briefly?’. Each time your joints come out of place, it makes the already compromised surrounding tissue weaker.
Ehlers-Danlos also causes lots of other symptoms, including fatigue, easy bruising, joints that click and digestive problems. Fatigue feels like you are in your own personal bubble of increased gravity, everything, no matter how small, is an achievement. It makes it almost impossible to accomplish anything. It’s as if someone has replaced your bones with concrete. Imagine spending your life on a wobble board, EDS is a little similar. Ehlers Danlos Syndrome affects every aspect of my life. I have to constantly think about what my joints are doing and coordinate myself to try and avoid any unnecessary subluxations or dislocations. I bruise so easily, so walking up the stairs and knocking my shins or having a simple blood test can leave me with severe bruising. Sometimes I bruise from someone simply touching me. My joints click excessively, which causes me a lot of pain. If I reach to get something, or even stand up, it can leave me with the pain and unpleasant sensation of my joints clicking and coming out of place.
It is something that is often misdiagnosed or missed completely because there is so little understanding about the condition, even in the medical profession. I don't know what its like to have a normal range of motion of my joints. They go too far in the right direction and they go in the wrong direction completely. As a result of this, I get crippling pain, which most painkillers won't touch. This is something that is going to affect everything that I do for the rest of my life. Some days are worse than others, and there is no cure, but, now I know what I am fighting against, I can arm myself with the knowledge to help make my life easier.
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